Caring for a Loved One: The Letter Every Caregiver Should Write

Life doesn’t come with a manual, and neither does caring for a loved one who is dying. And yet so many caregivers I’ve met follow such a similar pattern of behavior, it would almost seem that instructions had been written for them to follow.

It goes a little something like this:

tirelessly and selflessly care for a loved one for months and years on end

put aside all needs and wants, plans and prospects

feel tired and overwhelmed, yet grateful at the same time

immediately replace occasional feelings of resentment, with guilt

do this for as long as needed, until it is no longer needed

use newfound abundance of time following loved one’s loss to second guess and question every choice made while caring for loved one; cycle with guilt and regret indefinitely

Sound familiar? It’s human nature of course, to doubt and second guess ourselves when big things happen in our life, and to think maybe we could have done more, or perhaps we should have done something different.

But caregivers seem to do this at a whole different level. Maybe it’s because the choices they make are so big. Perhaps it’s because their end result (the loss of their loved one) is always a bad one.

What I do know is that hindsight is 20/20. Cliched maybe, but true. And the problem is that without realizing it, we take what we know now and apply it to what happened then.

I’ll give an example. A daughter who had spent weeks by her mother’s side in the hospital finally relents to the suggestions family and staff have been making to take a break. Maybe it was a quick trip to the hospital cafeteria for a coffee, or stepping out to use the bathroom or make a call, or maybe going home for a quick shower. But in that time, that short time of stepping away, her mother died.

I hear this story all the time. Of people being with their loved one for every second except for the moment they actually pass away, and the regret that follows them long after.

Or maybe the questions and second guessing are more far reaching – should we have gotten treatment sooner? Should we have placed him in that nursing home? Why did I lose my temper and get frustrated with her? I should have been there, I shouldn’t have hired a caregiver, I shouldn’t have lived so far for all those years, I should have told him that I loved him more often…

It can go on and on and on.

So back to the example of the daughter and the hospital. If the daughter had known her mother was going to die in that moment, would she have left? If someone had said, “Your mother is going to die at 3:30 this afternoon”, would she have gone for the shower or coffee at 3:30? Of course not.

But we beat ourselves up afterwards, as if we should have known better. As if we had this information and chose to ignore it, even though logically we know that’s not the case.

The other scenarios are just as bad…second guessing treatment or nursing home placement, or feeling guilty over things that were said or thoughts that we had…

Why does a caregiver (the one who quite literally gave care, concern, love, and assistance to their loved one in their final days) so often question themselves once their loved one is gone?

There are many answers, of course – a person’s natural inclination to second guess themselves, or a personality of taking blame and feeling guilty throughout their lives. Or perhaps it’s as simple as the caregiver’s mind wandering aimlessly with its new-found time. With no one to care for there is nothing left but time- time to think, time to second guess, and time to feel guilty.

Whatever the reason, I believe there is a way to relieve some of this guilt. The idea came to me as I’ve watched a loved one of mine act as caregiver. Being in this line of work, knowing the script that will be followed and wanting to spare her some of this pain, I suggested she write herself a letter.

For some it may seem “too late” as their loved one is already gone, but I say it is never too late to put our thoughts on paper. And the outline of the letter, for whoever is writing it, could go a little something like this:

“Dear Self,

Being a caregiver is hard. It is an honor and it is a privilege, but it is HARD.

At times I feel I should know more, or do more – yet I can only know or do what I am capable of knowing or doing.

While I may have support from friends, family and the medical establishment, in the end- the decisions rest entirely on my shoulders.

I have no ability to predict the future. I don’t know what treatment, pill or therapy is going to work or not going to work. I can’t say for certain that the choice I’m making is the right one or wrong one. I lack the ability to stand at a crossroads and simultaneously take each road so I know which will have the best outcome. I am always crossing my fingers, spinning the wheel of chance, and hoping for the best.

I need to remind myself that at most points in life there are rarely clear cut right and wrong answers and usually a whole lot of grey area answers somewhere in between.

I have to remind myself that the person I’m caring for has choices, and has made choices, and that I am not (or have ever been) totally in control of what happens.

I need to remind myself that I’m doing my best or that I have done my best. Some days my best was not very good. I need to forgive myself for that. If I’m telling myself that I didn’t do my best, or not as well as I could have, I will remind myself that I also never set out to do harm or do things badly.

I need to release myself from guilt for any thoughts I may have had about wanting this to be over. It will serve me better to remember that I have only ever wished away a time of confusion, pain and exhaustion. There was never a time where I didn’t want my loved one here with me, healthy and happy.

I need to let go of things that have happened. If a decision has been made and I feel I “should” have done it differently or better, I need to remind myself that no amount of thinking, ruminating, or obsessing about what has happened in the past can change or improve my present or future.

I will devote my thoughts to my loved one – who they are or were, what they have meant in my life, and what they would want for me in my future. If I feel myself sliding back into the “should” haves and “shouldn’t” haves, I will feel their loving influence direct me back to a path of caring for myself.

I will struggle and I will persevere. I will be gentle and patient with myself. I will take help when it’s offered and when I feel it’s right. I will take time to be by myself when I need it, and I will try to surround myself with people who understand what I’m going through, if that is what will help get me through the day.

I will do all of this. And I will do it every day, until I no longer need to do it any more.“

For anything that’s left – if there are apologies you want to make, or forgiveness you need to find for an apology you know you’ll never get, for the “should have” and “shouldn’t have” thoughts that circle endlessly in your head, write them down.

Recognize how freeing putting our thoughts on paper can be. Releasing them from a mind that will never let them rest, to a piece of paper where they can be recognized, honored and finally freed.

Know that sometimes, the tangible act of writing to yourself or your loved one may be the only thing that’s left to do. And perhaps the only way to free ourselves, forgive ourselves, and move ahead.

____________________________________________

Being a caregiver can be very isolating as we may not have the time or energy to socialize. In the days following the loss of someone we’ve loved and cared for, we may find ourselves with more time than we know what to do with- but are there people around to spend time with who’ll understand?

In time, most people do make their way back to their life and to those activities that took up their time prior to their life and role as caregiver.

But as we make this slow transition back, it could help to connect with someone who understands. Caregivers struggle with the loss of their loved one not just because they’ve lost an important person in their life, but they may also feel that they’ve lost their role and purpose.

At www.griefincommon.com we have members who understand. Sign up to connect with your fellow caregivers, and you’ll find the support, validation, and comfort you need.

9 thoughts on “Caring for a Loved One: The Letter Every Caregiver Should Write”

Thank you so much for this. I could have written this same letter many times. I was caregiver for my parents, four brothers, and just recently my sister who passed away last month (Dec. ’16). I’m the last one left of the siblings. It’s a lonely feeling.

I cared for my parents for 13 years and my husband for 20 years. Mom and Dad both died of kidney disease. My husband died of cancers caused by Agent Orange. I sold my business and “retired” in October of 2015 to care for all of them. They all died in 2016. My nursing skills are not very good, obviously. I am all alone now. I have no purpose. My life has no meaning. This is frightening to feel so very, very lost.

My husband passed away 3 months ago. I am feeling the lack of purpose now. I always worked, retiring 9 years ago, was involved in maintaining our church, etc. until I needed to become his full time care giver.

oh my. I thought I was the only one that felt this way. I cared for my husband for 10 years, but the last 9 months of his life were the hardest. He passed away 3 months ago. I miss him so much. No one to talk to about my day, who to talk to when I get home, who to cook for. I can see how there are those who start drinking, start doing drugs… anything to hide from the pain. I refuse to do these things, I get up and remember one step at a time.

My husbsnd died 4months ago and this 2027 Christmas was hard aftwr 35 together Remorse often knocks at my heart Your suggested letter to write is excellent Each day I make an effort to say something positive and encouraging to someone else Having something positive to look forward to each day helps even sonething small I remind myself life can still be good and this journey of grief eill pass God can bless us in the present so try to enjoy the small moments of joy

My mother died seven months ago on May 31st and she was best friends with all three of her daughters and her son. I was her primary caregiver and I must have read hundreds of grief posts and thousands of comments trying to piece together what happened and how I went from my absolute hardest trying to save her to her actively dying and then trying my absolute hardest to make sure she died the way that she wanted to. I have never commented on a single post this entire time but this letter is so powerful not just for the caregiver but also for anyone that wishes they had spent more time with their loved one but didn’t realize how fast someone can die or had other very real priorities. My mom was gone in months but lives forever in our hearts. I tried very very hard but did not give 100%, more like 95% because I thought it would be a much longer road and I needed to conserve some energy for that. I wasn’t able to tell her how much I loved her or needed her because I didn’t want her to think I thought she was dying. Being a caregiver is so hard because it is an honor and a priveledge and the same pride I feel in mainly succeeding to not make it about me and make it all about her also leaves me with wondering if she knew how much I loved her. Combating the feeling that “ If I’m telling myself that I didn’t do my best, or not as well as I could have, I will remind myself that I also never set out to do harm or do things badly.” Thank you for this letter. It helps to have something to say back to the regrets that play in a loop in my head, she of course would be heart broken to know I was feeling this way. I wish I had left it all on the table and quit my job and given everything and every second of the day. It’s only possible to know everything in retrospect, I would’ve had to know the exact day she was going to go from getting better to actively dying to dying four days later. I didn’t know what actively dying was and no one teaches us these important things. We are not taught how to know when death is near or how to care give or and we are not given the real resources we need to caregive for someone without losing our own livelihoods. I’m sorry to anyone reading this for their loss, give yourselves lots of slack and write this letter daily if you need to. Let the grief waves crash over you but know your loved one in a perfect state would want you to come up for air and would forgive you. Think about if you would forgive them if the situation was reversed and if you would want them to be happy and find happiness every day. Most days this doesn’t feel like reality and I pretend she’s alive, for the days I know she’s not thank you for this letter. I lost my dad and grandma and it was not like this. There are some losses where your heart now lives on the outside of your chest, torn in two, one half filled with heartache and the other half died with your loved one. And that’s ok. I forgive any other caregivers here for whatever they are regretting, no one prepared us for this and I hope I can be forgiven too or forgive myself someday. And for those that are sad that their loved one passed with them out of the room when you wanted to be there, I know the pain and regret must be terrible. But I have researched this and many times your loved one will wait specifically for you to leave so they can spare you the pain of seeing them die. That was their choice and not your fault, you may have given them a gift by not being there so that they could feel like they were giving you one. I’m so so sorry everyone for your loss. We can’t say I’m sorry and thank you and I love you enough to the ones we have that are still alive, and that includes ourselves.

Such a touching and to the point letter indeed….
A recent widow’ after 44 years of that old fashioned way of traditional’ loving and committed marriage’…
The last twelve years’ I was my husband’s caregiver through the deteriorating stages of Parkinson’s disease ….
A very difficult reality’ to suddenly not be a pair’ not be the other half of a loving couple anymore …